Tuesday, February 22, 2011

Blaming Big Medicine

Cancer is a frustrating, awful experience. In a world in which we all strive to be safe (airbags? antilock brakes? deadbolt locks?) and in control (calendars, schedules, savings accounts), cancer shows up and strips us bare. There will be no certainty, it says. You will not be in charge of this process. The course of the disease cannot be predicted--it's impossible even to say that one person's response to Taxol will be the same as another's. My aunt was diagnosed with multiple myeloma and given less than two years to live; thirteen years later, she died having outlasted every treatment the medical team could devise.

So perhaps it's no wonder that so many people seem to channel their fears and frustrations into fury--at the doctors, the drug companies, and the researchers who are trying frantically to come up with new and better weapons in the fight against cancer. A couple of weeks ago, I noted with interest the New York Times story about lymph node treatment. In short, researchers have found that about 20% of women with breast cancer--in particular, those at stage T1 or T2, with evidence of metastasis to the nodes but not palpable enlargements, and whose treatment includes lumpectomy with radiation and possibly chemotherapy--do not need to have further surgery to remove lymph nodes. This lymph node surgery is invasive and risky--my anecdotal impression is that many women who have undergone the extensive surgery end up with complications such as lymphedema. I was lucky that my cancer had not spread to my lymph nodes, but if it had, it would be a huge relief to know that my survival and risk of recurrence would not depend on having my armpit scraped clean.

So, an informative article about an interesting new development. But the comments to the article really drew my eye. I found them--let's say, less than rational. I'd like to highlight some of them here, with my responses.

hey geniuses, what about the other 80%? and what does that tell you? you can make statistics say whatever the hell you want them to.

Well, the other 80% don't get the luxury of skipping lymph node surgery. But that does not make the findings suspect, nor does it indicate "lying with statistics." Breast cancer research is moving in the direction of more individualized treatment--approaches customized to the individual person and her disease profile. So, it's not a failure to find a treatment applicable to 20%. It's progress for 1/5 of all patients. And we have to keep working for the rest.

I wish to hell medicine would make up its freakin' mind about all this. My theory is no one knows anything about anything! It's all guess work.

Not necessarily. Science moves forward, but in small steps. Plus, studies can conflict. Scientists look at all of the existing knowledge, and weigh study results against the real risks and opportunities for patients, and all of this informs their recommendations. Changing recommendations reflects progress, not guesswork.

And, finally--

the other 80% end up like my mother in law: dead within five years of a metastatic diagnosis because nodes were not removed and tested when the inital [sic] tumor removal occured.

First of all, this is very sad and my heart goes out to the commenter and her mother-in-law. At the same time, the comment implies (well, states flat out) that the death occurred because nodes were not removed or tested. Cancer is a complex, nasty, and often unpredictable disease. Many women whose nodes are removed, tested, or treated still die, tragically. A cancer death cannot be reduced to this one variable. It's tempting to look back at what wasn't done, what might have been--but even hindsight can't tell us how to save someone.

In short: faced with the dangers and uncertainties of cancer, it's natural to look around for someone to blame, and for a tangible target for our anger. But lashing out at the research studies and scientists on whom we rely for better treatments and longer lives--that seems misguided. Let's all be mad as hell at cancer. But let's support cancer research, be intelligent consumers of research, and figure out how to make the research help us live longer.

Although I hate seeing someone suffering who has been the subject of such scientific experimentation they call cancer "treatment", I am glad for those who study and fight cancer in its many manifestations. May their work be fruitful and benefit mankind!

I am glad you are still here gracing us with your astute and unique insights.

B. Your title had me believing that you would be addressing the view that "big medicine" is motivated first by profits, second by medical efficacy, and that these two motivations often don't converge. Perhaps in another post.

I get angry with some of the docs too but it's really the cancer I trust the least. My first oncologist was Hopkins trained, been on Oprah, and considered one of the best in breast cancer. She was so excited by the research but I feel my care was compromised by her and that her enthusiasm over the research was part of it. Without making you go bleary-eyed with the details, one of a few things that happened was the trial protocol resulted in my care being compromised. But not all clinical trials are this way - and in fact she had leeway she could take to optimize my treatment that I finally pushed for and got. Also, on the study that lymph nodes don't need to be removed, keep in mind there were more details to the report; whether to remove nodes depends on the size of the tumor and whether it looks like there are lots of nodes involved. Chemo as we know doesn't always catch everything so sometimes surgical removal is believed to be a good idea. Though it is crazy that the standard used to be to cut like 20 or 30 of them out, always.

I'm Rachel by the way. Two years out (as of Saturday) from breast cancer. YAY! Am also a long-time health writer. Will you please check out my site? www.1UpOnCancer.com Thanks!:)

Your Breast Cancer Blogger Today is...

I have two blogs--an inactive blog on my year of dealing with breast cancer (thankfully, and knock wood!, in the past) and one that has become my current record of adapting to life in Australia and learning to grow/create/cook my own Mexican food in a land with very few Mexicans!